How Caregiving Can Impact a Caregiver’s Mental Health

distressed caregiver talking on phoneOn November 4, 2014, Oregon resident Jillian McCabe drew international attention when she threw her 6-year-old autistic son to his death, over the side of the Yaquina Bay Bridge. Public response to the horrific event was divided. While some people, particularly parents of disabled or autistic children, advocated vigorous prosecution, others felt pity—pointing to the daunting physical, psychological, and emotional challenges McCabe faced while caring for her family.

Jillian McCabe was a live-in caregiver for her autistic son, as well as her husband who developed multiple sclerosis shortly after their son’s birth. She regularly blogged about the stress and frustration she faced as a caregiver and frequently stated that she was “trying to hold it together.” McCabe complained about hearing voices, which suggests that she may even have been experiencing symptoms of a serious mental health issue. Relatives also reported that she tried to commit suicide several times. Despite McCabe’s efforts to get help, relatives say she did not receive the services she needed.

While these psychological symptoms and the added stress of being a caregiver to multiple people certainly do not excuse an act of murder, it is possible that they played a role in the tragic outcome of the McCabe family. Could preventative steps have been taken?

A Caregiver’s Job Description

An estimated 44 million adults serve as caregivers in the United States today, and the stress can take a toll on their emotional and mental health.

Denver therapist Andrea M. Risi, LPC, a Topic Expert in health, illness, and medical issues, explains, “Caregiving means to help another person who is coping with a disability or illness without being compensated. Important qualities in a caregiver include empathy, patience, and reliability.”

Caregiving is not an easy task. It usually occurs within immediate families, but it can spread to friends and extended family members. A typical caregiver’s job description includes comforting companionship (e.g., conversation, stabilization while walking), domestic assistance (e.g., housekeeping, running errands), and personal care (e.g., bathing, grooming, toileting), without financial compensation.

Caregiving is widely viewed as a vital national health care resource worth an estimated $306 billion annually. However, most caregivers are ill-prepared to effectively fulfill their role, and many do not receive third-party support. Studies show that the strains of caregiving, coupled with a lack of caregiver support, can have serious consequences on a caregiver’s health.

How Caregiving Affects a Person’s Health

The mental, emotional, and physical demands of caring for chronically ill or disabled relatives can be particularly debilitating for caregivers. According to the Family Caregiver Alliance (FCA) (2006), more than one-third of America’s live-in caregivers provide health care assistance to others despite experiencing bad health themselves.

The FCA also reports that caregivers show higher levels of depression than family members who do not have caretaking responsibilities. It is estimated that 25% to 50% of caregivers meet the diagnostic criteria of major depression, and 40% to 70% show significant depressive symptoms. People who fill caregiving roles are also at higher risk of developing concurrent anxiety issues, chronic diseases, and substance dependence.

Caregivers also tend to experience higher levels of stress and frustration. A study by Schulz and Sherwood (2008) posits that caregiving is equipped with all the features of a chronic stress experience with high levels of unpredictability, uncontrollability, vigilance, and physical and psychological strain being major contributing factors. Roughly 26% of caregivers report feeling emotionally drained, and chronic caregiver stress has been linked with cognitive decline, including deficits in attention, memory, and verbal ability.

It is important to note that caregivers tend to go through greater psychological and emotional distress as the care-receiver’s functionality deteriorates (as in the case of a person with dementia), and these feelings might persist even after the care-receiver is placed in a nursing home.

Physical setbacks may also be experienced during caregiving. Caregivers are at greater risk for headaches, bodily pain, obesity, high blood pressure, heart disease, and cancer. Caregiver stress can also contribute to increased mortality. Elderly spousal caregivers (aged 66-96), who are exposed to caregiver stress, have a 63% higher mortality rate than non-caregiving peers of the same age.

How to Help Yourself or Another Caregiver

While the quintessential caregiver role involves the administering of treatment, it must be remembered that caregivers, too, are in need of care. One way for people to effectively manage caregiver stress and depression is to seek the assistance of a therapist.

“Therapy can help the caregiver cope with his or her own feelings about the other person’s illness. Often, involved family or friends have strong opinions about the course of care, and that can add stress to the caregiver. Having an unbiased person to talk to, like a licensed therapist, can help offer the caregiver different perspectives and insights into overseeing the person’s care. It can also help the caregiver deal with the mixed feelings and emotions that come with caregiving,” Risi said.

For individuals experiencing caregiver stress, Risi suggests the following practical points to facilitate effective and healthy caregiving:

  • Take care of yourself. It is important for the caregiver to recognize his or her own needs and tend to them first. If you are experiencing burnout, you will not be able to effectively help the person in need of care.
  • Ask for help. Caregiving does not have to be solely your responsibility. Some caregivers have a difficult time asking for help from others, but getting support to share the responsibility can help you avoid caregiver burnout.
  • Be realistic about the illness and prognosis. Educate yourself and ask questions in order to be prepared for the reality of the illness.
  • Use respite care services. A wide range of services are available to give a break to caregivers and can last from a few hours to a few days. Informally, you can ask another family member or a friend to give you a break, but there are formal respite services available in most communities. Use this time to recharge and look after yourself.
  • Find emotional support. You can talk with family, trustworthy friends, a support group, your pastor, or a therapist. Having someone to share your feelings with can help ease the burden of caregiving.

Other Caregiver Resources

  • The National Alliance on Mental Illness (NAMI) provides a variety of education and support programs for family members of a person with a mental health condition, free of cost. These include NAMI Family-to-Family, NAMI Basics, and NAMI Family Support Group.
  • For caregivers of people experiencing Alzheimer’s disease, the Alzheimer’s Foundation of America invites you to reach out for care by calling (866) 232-8484 for general information, counseling, and referrals to nationwide resources
  • The U.S. Department of Veterans Affairs (VA) provides many resources for caregivers of military veterans. These include a toll-free caregiver support line (855) 260-3274, a caregiver support coordinator, adult day health care centers (ADHC), home-based primary care (HBPC), skilled home care, the homemaker and home health aide program, home telehealth, respite care, and home hospice care.
  • Additionally, every Wednesday at 8 a.m., 12 p.m., and 8 p.m. Eastern Time during National Family Caregivers Month in November, the VA invites caregivers for military veterans to call (800) 767-1750, enter access code 73687 and press the # button. Caregivers will be treated to meditation activities on the phone, which will help them relax and restore their balance.

References:

  1. Alzheimer’s Foundation of America. (2014). Caregiving tips: Strategies for success. Retrieved from http://www.alzfdn.org/EducationandCare/strategiesforsuccess.html
  2. Family Caregiver Alliance. (2006). Caregiver health. Retrieved from https://caregiver.org/caregiver-health
  3. Fantz, A. (2014). Mom blogged about son with autism she’s accused of killing. Retrieved from http://edition.cnn.com/2014/11/05/justice/oregon-mother-autism-son-death/index.html
  4. National Alliance on Mental Illness. (n.d.). Education, training and peer support center. Retrieved from http://www.nami.org/template.cfm?section=Education_Training_and_Peer_Support_Center
  5. Schulz, R. & Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108 (9), 23-27. doi: 1097/01.NAJ.0000336406.45248.4c
  6. United States Department of Veteran Affairs. (2014). VA caregiver support. Retrieved from http://www.caregiver.va.gov/support/support_services.asp

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  • Mara

    Mara

    December 12th, 2014 at 10:18 AM

    We all face overwhelming responsibilities in our lives, some greater than others, but that does not excuse the fact that we cannot go off the deep end because of the responsibilities that we face.
    It may feel like we are going off a cliff, but we also have to know right from wrong and continue to have a grasp on what is expected out of us as a society..
    This woman needed help, that much is clear, but don’t you think that in some ways, via blogging and talking about it, that she did understand that she needed this help and that she needed to be more vocal in making others understand this need?

  • Judi

    Judi

    July 23rd, 2017 at 3:18 PM

    I’m thinking many who read her blog worried and encouraged her to get help.

  • chelsea

    chelsea

    December 12th, 2014 at 3:06 PM

    I do understand that this can be a difficult position to find oneself in, but there is always help out there for you even when you feel like you are the most alone. You may not see it and may even need some guidance from friends and family, but there is no need for you to feel like you have to do this by yourself because there is help out there for you when you need it.

  • Deb

    Deb

    December 12th, 2014 at 7:48 PM

    No there isn’t … No family . No medical people . My sons injury will never heal and all the medical people do is say I’m sorry there’s nothing more we can do . I was a nurse for 27 years I know how to ask for help and from whom . I have tried . Finally I stopped asking . I have a private counselor but there isn’t much she can do . I just keep going .

  • Pamela B.

    Pamela B.

    October 2nd, 2016 at 11:01 AM

    Where lol

  • Deb

    Deb

    December 12th, 2014 at 5:09 PM

    I have taken care of my 27 yr old son for 8 years after a career ending . Life altering back injury and 7 surgeries . Divorce . Wt gain . Family abandonment because they can’t stand seeing him in pain and disabled . My own disability and end to a career . I will not judge anyone ! Unless you have been there you have no idea of the stress and pain of it ! None !

  • Judi

    Judi

    July 23rd, 2017 at 3:21 PM

    It would seem the norm to go into deep depression and to be desperate under your circumstances. I am glad you have a therapist but I wish you also had help and friends.

  • Jake

    Jake

    December 14th, 2014 at 5:07 AM

    Yes this is hard for many people and there are too many people in this position who go unappreciated but at the same time there are also those people who thrive in this role, they relish the opportunity to be the one whom others depend on and therefore they love what they do. I don’t always think that this is fair nor is it a position that I myself would want to fulfill, and there are also those times that I think that there are those who do all of this for the absolute wrong reasons, but it is what it is and it is not my position to judge them. To each his own.

  • mena

    mena

    December 15th, 2014 at 3:54 AM

    I understand that being a caregiver can be a truly difficult spot to be in, especially if you are doing it not because you necessarily want to but because you feel as if you are obligated to do something for this person. Those who are functioning in this role and see it from this perspective are probably the ones who will have the most difficult and challenging time adjusting to their role and who will resent the fact that this is something that they now are expected to do. I would hope that anyone in this role will find the support that they need because if you do not have that then it can be very lonely to find yourself as the only person taking care of this other.

  • Anwen

    Anwen

    December 15th, 2014 at 5:16 AM

    This is really a sad news and we can’t judge anyone unless u haven’t been there..but one thing i can say, don’t lose your hope as u can’t see your next minute.

  • jose

    jose

    December 15th, 2014 at 3:13 PM

    My mom has become somehow the designated caregiver for the whole family, not sure how she got that task but that is what it is and now she never has a break because all of her time is spent taking care of the other people in the family.

    There are plenty of others who could pitch in and who have more time than what she does but somehow they are the ones who seem to disappear anytime there is something that need to be done.

    I try to help out as much as I can but i have a full time job too so that makes it hard for me to help her out.

  • JonS

    JonS

    December 17th, 2014 at 3:56 PM

    Sadly those who give so much care to others rarely get that same kind of comfort and care from their own loved ones when they most could use a helping hand.

  • mary

    mary

    August 27th, 2015 at 10:51 PM

    since we can’t get any help, tell me why in the hell the families can’t help their family members, this includes all that is kin to them. The blood is on their hands too.

  • Judi

    Judi

    July 23rd, 2017 at 3:30 PM

    It’s human nature to avoid it. It takes someone who will look at the situation and own part of it. The caretaking is the hardest part. I’m a nurse and still, I hesitate to get in there and help with the care except when it’s family. If it’s family, I will do the direct care and expect the rest to be taken on by those who can’t.

  • Debby

    Debby

    October 2nd, 2015 at 6:17 PM

    I too take care of a twenty four year old adult child. I have taken care of her most of her life. Her father is a dead beat, he only helped out the first five years of her life. We divorced after that because he had addictions , and was not responsible. I have gone it alone. She went to daycares until 14 because she was small, and I counld get away with it. But then things became very difficult. Needed shift changes at work, and they were not willing to accommodate me. The stress was affecting me, till I had nervous breakdown. Spent more then a week in mental ward, and then 3 months of out patient therapy. Just to loose my job. And apply for disability myself. I now am sole caregiver for my daughter. I have other family members who can go sometimes, but they choose to look the other way, knowing I am exhausted. And I am also 7 years younger then my eldest sister, but look ten years older due to stress. I know I can’t make people help me, but as Christians I think they could put there own selfishness aside to help out someone who could really need a break…..Just venting, thanks for listening…and God Bless. Debby Oklahoma

  • Susan

    Susan

    November 17th, 2015 at 5:03 AM

    “While these psychological symptoms and the added stress of being a caregiver to multiple people certainly do not excuse an act of murder, it is possible that they played a role in the tragic outcome of the McCabe family. ? What is with this tiptoe language? How could they not play a role – how could they not play a major role?

  • Barb

    Barb

    November 18th, 2015 at 5:17 AM

    I am sorry for this person not receiving the help she needed, thrre is obviously much more to this one story. This article is full of doom and not all situations are like this one. God’s grace covers so much when we are caregivers, yes the work is difficult. My prayers and mission are for helping those in need and loving them. Be strong, do not give up!

  • A NICHOLSON

    A NICHOLSON

    May 28th, 2016 at 5:36 PM

    No one, but no one knows what it is like to be alone and taking care of a disabled person. Especially a mentally ill one that can be very abusive. People like to “help” when they get something in return – such as gratitude or recognition or appreciation. These things aren’t too often offered by a severely mentally ill person. Also, it is draining to hear me discuss my problems, and people avoid me like the plague when I do – so I go around acting like a happy go lucky person and speak little of my son. My friends, relatives know I have a son, but no one asks how he is doing or how I am doing – I mean after all, I might answer the question. I gave birth to him so as far as I can tell it is my responsibility to take it all on and take it all on alone. Only I should be abused, financially compromised, live alone – because he is mine. I’ve communicated with people like me, and it is the same story for all of us. It is just a fact of life and it is a hard life to live.

  • trish

    trish

    September 9th, 2016 at 11:20 PM

    i would appreciate having information on where to find a group of people to talk with as i feel pretty alone in this situation. looking for beauty among the ashes too. may you find rest & healing in the arms of Christ the great Pysician~TrishM

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